North Haven Boy Advocates for Rare Disease Awareness

State Senator Len Fasano (R-North Haven) and State Representative Dave Yaccarino (R-North Haven) welcomed a special guest to the state capital last week to help bring awareness to a rare disease and urge state lawmakers to support effected families and research for treatment.

State Senator Len Fasano (R-North Haven) and State Representative Dave Yaccarino (R-North Haven) welcomed a special guest to the state capital last week to help bring awareness to a rare disease and urge state lawmakers to support effected families and research for treatment.

Hunter Pageau, a 4th grade boy and student council member from North Haven, and his mother Sharon Agli-Pageau testified on February 25 in front of the Government Administrations and Elections Committee in support of Fasano and Yaccarino’s proposed legislation “An Act Designating a Spinal Muscular Atrophy with Respiratory Distress Awareness (SMARD) Day.”

Hunter has SMARD, an extremely rare life-threatening motor neuron disorder. Only 10 people in the United States have this disease, and only 80 worldwide. For the past decade, Hunter and his family has advocated for more awareness and research to help those who have SMARD and their families.

“I am wanting and hoping to make a true difference for those with SMARD because I know how extra challenging everyday life can be and how important it is to have compassionate support for others,” Hunter testified. “I shared my hopes with State Representative Yaccarino and Senator Fasano whom also believe firmly in the importance of raising SMARD awareness with hopes of moving closer to better treatment and research for a cure.”

Hunter asked members of the General Assembly to support Fasano and Yaccarino’s legislation to designate SMARD Awareness day to help others learn about the disease and work together to support families and research for new treatments.

“I will be 10 years old this year,” Hunter told the Government Administrations and Elections Committee members. “I would like nothing more than to achieve my long term goal of raising SMARD awareness in Connecticut. Will you please join me to make the next decade full of opportunities that are not there for me right now due to SMARD being an unknown disease? I need your help for a better life, an equal life to those of my friends, but I can’t achieve this without you. I will continue to be hopeful.”

Hunter’s mother echoed his message and explained the importance of awareness.

“Your support will further our decade long efforts to remove the extreme isolation and lesson the profound hardships faced by SMARD families, due to the Orphan disease status, as designated by the National Organization for Rare Diseases. We’re the face of SMARD, we are mostly alone and we are kindly asking to be ‘adopted,’ per se, by our home state, via the passing of House Bill 6100,” Sharon Agli-Pageau testified.

“We’re not advocating simply for ourselves. We’re advocating for the others to come. There will be more people diagnosed with this and simply just do not want these newfound cases and families to be struggling in the way that we’ve had to for the last 10 years. We don’t want them to be alone,” Agli-Pageau continued.

Fasano and Yaccarino proposed a bill to establish SMARD awareness day after hearing Hunter’s story.

“Hunter is an absolute inspiration. He is one of the strongest, bravest individuals I have ever met,” said Sen. Fasano. “His message is clear and profound. It’s time for Connecticut to recognize the disease that has challenged this amazing family so that we can spread awareness and work together towards finding and embracing hope.”

“I am honored and privileged to help my friend bring awareness to this rare and life-threatening illness,” Rep. Yaccarino said. “Hunter is an inspiration, and listening to him tell his story to the legislature is indicative of how passionate he is to help others who are battling rare diseases. It’s important we increase awareness and promote understanding of diseases like SMARD.”

Hunter spoke about his experiences at the public hearing and also asked state legislators to picture being in his shoes.

“I’d like for you to take a minute to imagine what your life would be like if you had a rare disease, if the world was just in the beginning stages of learning about it,” Hunter instructed the legislators during his testimony. “I bet you would want others to love and support you with all of the hardships you’d face, believe in you, encourage you, and stand beside you on your journey. No one should ever have to be alone when battling a rare disease. The love and support that you share can make all the difference.”